The Associated Press Sun 11/06/11
For James Michael Taylor, an evening bath became a death sentence.
Taylor, who was 41 and a quadriplegic, had little more ability than a newborn baby to lift his head. Bathing him required the constant attention of a staff member at the group home for the developmentally disabled where he lived, near Schenectady, N.Y.
One summer night in 2005, a worker lowered Taylor into the tub, turned on the water and left the room. Over the next 15 minutes, the water slowly rose over his head. He drowned before anyone returned.
Joan Taylor, his mother, remembers the words her husband said as dirt was shoveled onto their son’s grave.
”This is the last time they’re going to dump on you,” he told his dead son.
James Taylor’s death was no aberration.
In New York, it is unusually common for developmentally disabled people in state care to die for reasons other than natural causes.
One in six of all deaths in state and privately run homes, or more than 1,200 in the past decade, have been attributed to either unnatural or unknown causes, according to data obtained by The New York Times that has never been released.
The figure is more like one in 25 in Connecticut and Massachusetts, which are among the few states that release such data.
What’s more, New York has made little effort to track or thoroughly investigate the deaths to look for troubling trends, resulting in the same kinds of errors and preventable deaths, over and over.
The state does not even collect statistics on specific causes of death, leaving many designated as “unknown,” sometimes even after a medical examiner has made a ruling.
The Times undertook its own analysis of death records and found disturbing patterns: some residents who were not supposed to be left alone with food choked in bathrooms and kitchens. Others who needed help on stairs tumbled alone to their deaths. Still others ran away again and again until they were found dead.
Taylor was hardly the only resident to drown in a bathtub. Another developmentally disabled man at a house run by the same nonprofit organization drowned in a tub four months earlier. The earlier drowning took place at a group home operated by a local chapter of the New York State ARC, the nation’s largest nonprofit organization serving the developmentally disabled. ARC officials in Schenectady declined to comment.
Through a Freedom of Information request to the State Commission on Quality of Care and Advocacy for Persons With Disabilities, The Times obtained data for all 7,118 cases of developmentally disabled people — those with conditions like cerebral palsy, autism and Down syndrome — who died while in state care over the past decade.
The data from the agency, which is responsible for overseeing treatment for the developmentally disabled, included only the broad “manner” in which people died — by homicide or suicide, accidents or natural causes.
By far the biggest category, other than natural causes, was “unknown,” accounting for 10 percent of all deaths in the system.
The records suggested problems in care may be contributing to those unexplained deaths. The average age of those who died of unknown causes was 40, while the average age of residents dying of natural causes was 54.
The Times reviewed the case files of all the deaths not resulting from natural causes that the commission investigated over the past decade and found there had been concerns about the quality of care in nearly half of the 222 cases.
The records also showed that problems leading to deaths rarely resulted in systemwide steps, like alerts to all operators of homes, to prevent mistakes from recurring. Responses were typically limited to the group home where a resident died.
At homes operated by nonprofit organizations, low-level employees were often fired or disciplined, but repercussions for executives were rare. At state-run homes, it is also difficult to take action against caregivers, who are represented by unions that contest disciplinary measures.
New York relies heavily on the operators of the homes to investigate and determine how a person in their care died and, in a vast majority of cases, accepts that determination. And the state has no uniform training for the nearly 100,000 workers at thousands of state and privately run homes and institutions.
The value of analyzing death records for problems in care that could be prevented through alerts or training has been well established, and is encouraged by the federal Government Accountability Office. @Officials in Connecticut, for example, noticed four choking deaths in 2006, the first year the state published such data. They developed a statewide program — two days of initial training and a refresher course every two years thereafter. The state has had just one choking death since 2007. New York has had at least 21 during that same period.
”It’s incredibly important,” said Terrence W. Macy, commissioner of the Department of Developmental Services in Connecticut. “If everybody knows you study it this hard and you have this level of detail, it’s going to have an impact.”
There is no question that it can be extremely challenging to care for the developmentally disabled, a population that includes some people who are fragile and immobile and others who are unruly and inclined toward violence. But the problems in the New York system appear especially troubling given that the state spends $10 billion caring for the developmentally disabled — more than California, Texas, Florida and Illinois combined — while providing services to fewer than half as many people as those states do.
This year, Gov. Andrew M. Cuomo forced the commissioners of the two agencies that oversee the developmentally disabled to resign amid a Times investigation of abusive state employees.
In interviews, the officials who replaced them acknowledged problems with how the state tracks and seeks to prevent untimely deaths.
Courtney Burke, the commissioner of the Office for People With Developmental Disabilities, which operates and oversees thousands of group homes, acknowledged that her agency suffered from a lack of transparency and what she called “a culture of nonreporting.”
”One of the things I’m seeking to do,” she said last month, “is have better data on those deaths.”
A quarter of the 222 death files reviewed by The Times involved a person choking to death. And given the state’s poor recordkeeping, the actual number of choking deaths is likely larger. The deaths often occur when residents try to eat food too quickly; physical limitations also play a role.
A lack of standards and accepted definitions of basic terms also leads to deadly confusion.
Terms like “bite-size” and “chopped,” which are key to defining what is safe for a person to eat, can be left open to interpretation by the staff at a given institution or group home.
The Commission on Quality of Care regularly asks individual homes to revisit those definitions, but the state has not resolved varying interpretations.
State officials in New York cannot even agree on how many people are dying. The Office for People With Developmental Disabilities says 933 people in state care died in 2009. The Commission on Quality of Care says 757 did. Neither agency could explain the discrepancy.
Outside experts said they were particularly puzzled that records maintained by the state would list the cause as “unknown” in more than 700 deaths over the past decade, and wondered how hard state officials had tried to determine what happened.
The state has also not undertaken a broad review of whether group homes, which now care for a vast majority of the state’s developmentally disabled, have appropriate safety modifications to protect residents who often do not understand that they are in danger in the event of an occurrence like a fire.
The Times reported in March that a whistle-blower warned a senior state official in 2008 that fire-drill records were also being routinely faked or implausibly speedy evacuation times were being claimed.
Some steps have been taken to address fire safety: tighter rules guiding new construction, bringing in outside supervisors for fire drills and outside experts for inspections. But Burke’s agency did not say when it would review whether homes in the system might be lacking fire safety features sufficient enough for developmentally disabled residents.
Meanwhile, Joan Taylor, 86, James’ mother, had pushed for an increase in staffing at her son’s group home near Schenectady, where three workers looked after eight severely developmentally disabled residents. She has been a fierce advocate for people with developmental disabilities for decades.
She started a parent group, lobbied in Albany and was appointed to the capital-area Board of Visitors of the Office for People With Developmental Disabilities. She is most proud of helping get legislation passed in 2002 that gave parents control over end-of-life decisions for the developmentally disabled. “I was insulted I couldn’t make that decision for my son, who I wanted to die with dignity,” she said.
On a recent day, as Taylor sat on the back porch of her apartment at a retirement home in Saratoga Springs, wearing tennis shoes and shorts, she leafed through the guestbook from her son’s funeral, filled with 300 signatures, including those of local elected officials.
”I don’t know if my kid died with dignity or not,” she said.
# For the full New York Times article visit:
http://www.nytimes.com/2011/11/06/nyregion/at-state-homes-simple-tasks-and-fatal-results.html
New York Times InvestigationBy DANNY HAKIM and RUSS BUETTNER
Taylor, who was 41 and a quadriplegic, had little more ability than a newborn baby to lift his head. Bathing him required the constant attention of a staff member at the group home for the developmentally disabled where he lived, near Schenectady, N.Y.
One summer night in 2005, a worker lowered Taylor into the tub, turned on the water and left the room. Over the next 15 minutes, the water slowly rose over his head. He drowned before anyone returned.
Joan Taylor, his mother, remembers the words her husband said as dirt was shoveled onto their son’s grave.
”This is the last time they’re going to dump on you,” he told his dead son.
James Taylor’s death was no aberration.
In New York, it is unusually common for developmentally disabled people in state care to die for reasons other than natural causes.
One in six of all deaths in state and privately run homes, or more than 1,200 in the past decade, have been attributed to either unnatural or unknown causes, according to data obtained by The New York Times that has never been released.
The figure is more like one in 25 in Connecticut and Massachusetts, which are among the few states that release such data.
What’s more, New York has made little effort to track or thoroughly investigate the deaths to look for troubling trends, resulting in the same kinds of errors and preventable deaths, over and over.
The state does not even collect statistics on specific causes of death, leaving many designated as “unknown,” sometimes even after a medical examiner has made a ruling.
The Times undertook its own analysis of death records and found disturbing patterns: some residents who were not supposed to be left alone with food choked in bathrooms and kitchens. Others who needed help on stairs tumbled alone to their deaths. Still others ran away again and again until they were found dead.
Taylor was hardly the only resident to drown in a bathtub. Another developmentally disabled man at a house run by the same nonprofit organization drowned in a tub four months earlier. The earlier drowning took place at a group home operated by a local chapter of the New York State ARC, the nation’s largest nonprofit organization serving the developmentally disabled. ARC officials in Schenectady declined to comment.
The data from the agency, which is responsible for overseeing treatment for the developmentally disabled, included only the broad “manner” in which people died — by homicide or suicide, accidents or natural causes.
By far the biggest category, other than natural causes, was “unknown,” accounting for 10 percent of all deaths in the system.
The records suggested problems in care may be contributing to those unexplained deaths. The average age of those who died of unknown causes was 40, while the average age of residents dying of natural causes was 54.
The Times reviewed the case files of all the deaths not resulting from natural causes that the commission investigated over the past decade and found there had been concerns about the quality of care in nearly half of the 222 cases.
The records also showed that problems leading to deaths rarely resulted in systemwide steps, like alerts to all operators of homes, to prevent mistakes from recurring. Responses were typically limited to the group home where a resident died.
At homes operated by nonprofit organizations, low-level employees were often fired or disciplined, but repercussions for executives were rare. At state-run homes, it is also difficult to take action against caregivers, who are represented by unions that contest disciplinary measures.
New York relies heavily on the operators of the homes to investigate and determine how a person in their care died and, in a vast majority of cases, accepts that determination. And the state has no uniform training for the nearly 100,000 workers at thousands of state and privately run homes and institutions.
The value of analyzing death records for problems in care that could be prevented through alerts or training has been well established, and is encouraged by the federal Government Accountability Office. @Officials in Connecticut, for example, noticed four choking deaths in 2006, the first year the state published such data. They developed a statewide program — two days of initial training and a refresher course every two years thereafter. The state has had just one choking death since 2007. New York has had at least 21 during that same period.
”It’s incredibly important,” said Terrence W. Macy, commissioner of the Department of Developmental Services in Connecticut. “If everybody knows you study it this hard and you have this level of detail, it’s going to have an impact.”
There is no question that it can be extremely challenging to care for the developmentally disabled, a population that includes some people who are fragile and immobile and others who are unruly and inclined toward violence. But the problems in the New York system appear especially troubling given that the state spends $10 billion caring for the developmentally disabled — more than California, Texas, Florida and Illinois combined — while providing services to fewer than half as many people as those states do.
This year, Gov. Andrew M. Cuomo forced the commissioners of the two agencies that oversee the developmentally disabled to resign amid a Times investigation of abusive state employees.
In interviews, the officials who replaced them acknowledged problems with how the state tracks and seeks to prevent untimely deaths.
Courtney Burke, the commissioner of the Office for People With Developmental Disabilities, which operates and oversees thousands of group homes, acknowledged that her agency suffered from a lack of transparency and what she called “a culture of nonreporting.”
”One of the things I’m seeking to do,” she said last month, “is have better data on those deaths.”
A quarter of the 222 death files reviewed by The Times involved a person choking to death. And given the state’s poor recordkeeping, the actual number of choking deaths is likely larger. The deaths often occur when residents try to eat food too quickly; physical limitations also play a role.
A lack of standards and accepted definitions of basic terms also leads to deadly confusion.
Terms like “bite-size” and “chopped,” which are key to defining what is safe for a person to eat, can be left open to interpretation by the staff at a given institution or group home.
The Commission on Quality of Care regularly asks individual homes to revisit those definitions, but the state has not resolved varying interpretations.
State officials in New York cannot even agree on how many people are dying. The Office for People With Developmental Disabilities says 933 people in state care died in 2009. The Commission on Quality of Care says 757 did. Neither agency could explain the discrepancy.
Outside experts said they were particularly puzzled that records maintained by the state would list the cause as “unknown” in more than 700 deaths over the past decade, and wondered how hard state officials had tried to determine what happened.
The state has also not undertaken a broad review of whether group homes, which now care for a vast majority of the state’s developmentally disabled, have appropriate safety modifications to protect residents who often do not understand that they are in danger in the event of an occurrence like a fire.
The Times reported in March that a whistle-blower warned a senior state official in 2008 that fire-drill records were also being routinely faked or implausibly speedy evacuation times were being claimed.
Some steps have been taken to address fire safety: tighter rules guiding new construction, bringing in outside supervisors for fire drills and outside experts for inspections. But Burke’s agency did not say when it would review whether homes in the system might be lacking fire safety features sufficient enough for developmentally disabled residents.
Meanwhile, Joan Taylor, 86, James’ mother, had pushed for an increase in staffing at her son’s group home near Schenectady, where three workers looked after eight severely developmentally disabled residents. She has been a fierce advocate for people with developmental disabilities for decades.
She started a parent group, lobbied in Albany and was appointed to the capital-area Board of Visitors of the Office for People With Developmental Disabilities. She is most proud of helping get legislation passed in 2002 that gave parents control over end-of-life decisions for the developmentally disabled. “I was insulted I couldn’t make that decision for my son, who I wanted to die with dignity,” she said.
On a recent day, as Taylor sat on the back porch of her apartment at a retirement home in Saratoga Springs, wearing tennis shoes and shorts, she leafed through the guestbook from her son’s funeral, filled with 300 signatures, including those of local elected officials.
”I don’t know if my kid died with dignity or not,” she said.
# For the full New York Times article visit:
http://www.nytimes.com/2011/11/06/nyregion/at-state-homes-simple-tasks-and-fatal-results.html
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